Most people do not think about what they need until it is urgent. At eleven, living in constant pain, I needed a diagnosis. My doctor suspected Crohn’s disease, and the only way to confirm it was through a capsule endoscopy of my digestive tract. Before I could have that procedure, my insurance required me to first undergo an MRI, even though my doctor already knew it would likely show nothing. The wait for each appointment stretched on, week after week, while my health declined. What could have taken weeks dragged into months, when what I needed was care without delay. 

That same inertia has followed me ever since. I have felt it in waiting for the right medication, in navigating rules that never move as quickly as my illness demands, and in the constant uncertainty of whether support will be there when I need it most. These are not isolated frustrations, but rather the predictable consequences of systems built for paperwork and protocol, not for people whose health depends on speed. 

The most damaging expression of that system is a practice called step therapy, or fail-first. Insurers require patients to try and fail cheaper medications before they will cover the treatment a physician has already determined they need. A 2016 Crohn's and Colitis Foundation survey found that 40 percent of IBD patients have faced this requirement, with more than half experiencing delays exceeding three months and nearly one-third waiting more than seven.⁴ A 2019 American Medical Association survey found that 91 percent of physicians attributed care delays to prior authorization requirements, and 28 percent reported that those delays led to serious patient regression.² These are not delays in comfort. They cause disease progression, avoidable hospitalizations, and, in severe cases, irreversible harm. 

The policy gap making this possible is specific and closeable. Massachusetts enacted baseline step therapy protections under Governor Baker, but the current statute lacks enforceable response timelines and standardized criteria for when insurers must grant exceptions. A physician can determine that a cheaper drug is contraindicated for their patient and still watch that patient wait with no legal guarantee of a response. More than 30 states have already addressed this. New York requires that urgent exception requests be approved within 24 hours and that clinical criteria be grounded in evidence rather than cost alone.³ Pennsylvania passed bipartisan legislation exempting patients from step therapy protocols based on a physician's medical judgment. Massachusetts, a state that leads in healthcare in almost every other respect, is falling behind.¹ 

At the federal level, the Safe Step Act would extend these protections nationwide, requiring insurers to follow medical timelines and guaranteeing patients a clear, fast appeals process when treatment is denied. It has the support of patients, physicians, and major health organizations who have seen firsthand what months of delay actually cost. 

Neither of these solutions requires rebuilding the system from scratch. What they require is pressure from people who understand what is at stake. Contacting your legislators, joining the Crohn's and Colitis Foundation's advocacy network, or becoming an Advocacy Champion who brings lived experience directly to lawmakers are all ways to move these bills forward. When legislators hear from constituents, they act. The evidence for reform exists. The precedent exists. The patients who need it have already been waiting long enough. 

IBD does not pause for administrative timelines. Every delay, whether in treatment or in policy, forces patients to bear costs that should never have been theirs. No one should have to fight that hard simply to receive the care their doctor prescribed. Change is possible, but only if enough people decide the wait is over.

References

[1] American Medical Association. “Prior Authorization Physician Survey.” 2019. https://www.ama-assn.org/practice-management/prior-authorization/prior-authorization-p hysician-survey. 

[2] American Academy of Dermatology. “Step Therapy and Prior Authorization Reform.” AAD Impact, 2022, no. 3. https://www.aad.org/member/publications/impact/2022-issue-3/step-therapy-and-prior-au thorization-reform.

[3] Arthritis Foundation. “Arthritis Step Therapy New York.” https://www.arthritis.org/news/arthritis-step-therapy-new-york. 

[4] Crohn's & Colitis Foundation. “Step Therapy and Fail First.” 2016. https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/steptherapyf inal.pdf.